In the third in our series about the first formal meeting of the newly-formed Society for Neuro-Oncology Sub-Saharan Africa (SNOSSA), held in Abuja, Nigeria on 22-23 July, 2018, Ngong Jasino Tabali J, a public health specialist and brain tumour patient advocate with Jacob’s Hope Foundation (Cameroon) gives his reflections on the event:
The inaugural SNOSSA meeting saw the coming together of healthcare professionals in the field of neuro-oncology together with patients, patient advocates, caregivers and others. At this first gathering, in Abuja, Nigeria, we witnessed the bridging of the gap between care providers and caregivers and advocates – all brought together to the same platform to share experiences and best practices.
The problems discussed were wide-ranging and included those of a clinical nature, as well as issues surrounding advocacy, the caregiver’s perspective and public health policy as it relates to brain tumour management. Observing and learning about the issues faced in different sub-Saharan Africa countries showed that common topics were:
- challenges of brain tumour and spinal surgeries
- lack of baseline data on brain tumours
- the ratio of patient to neurosurgeons/neuro-oncologists
- missed diagnoses and the low rates of second opinion referral
- under-availability of specialists (e.g. neuropathologists) in the diagnosis process
- poor identification of a country’s needs by ministries of public health
- misappropriation of funds
- inadequate communication strategies and platforms
- lack of necessary technical support for the maintenance of equipment such as radiotherapy machines and MRI
- behavioural patterns of care providers and the relation to quality brain tumour care
- the sharing of data on successes and failures in brain tumour care
Issues affecting brain tumour care, especially paediatric glioma, were the focus of much of the discussion, with different neurosurgeons sharing their experiences and explaining advanced techniques and technology that can improve care for brain tumour patients. Best practices were also shared from a variety of specialists from different countries.
It was recognised that multidisciplinary teams are very important in the fight against brain tumours, much like they are for other diseases affecting sub-Saharan Africa. Patient advocacy is neglected in brain tumour care, as it is in other public health problems.
Networking between all stakeholders is one of SNOSSA’s strengths. Different parties sharing their point of view is the catalyst for the provision of best care.
Multidisciplinary teamwork results in better communication, especially regarding the needs of patients. This could be done through:
- sensitisation to brain tumour issues and provision of adequate information, with improved links to care, second opinion and referrals
- providing information on therapeutic options (whether locally available or not) which allows patients and families to be fully informed and seek alternative therapeutic options
- challenging the stigma and discrimination associated with brain tumours in the African context, which causes communication difficulties
- building connections between other patient advocate groups in Nigeria and across sub-Saharan Africa and sharing best practice on how to confront common bottlenecks in relation to stigma.
The SNOSSA meeting delegates found that there is a need for change in behavioural patterns among brain tumour care providers in sub-Saharan Africa – towards one another and towards patients – to overcome major roadblocks in providing quality care. Additionally, certain care providers don’t share information and are slow to refer. A theme emerged at the conference that there can be an attitude for care providers to appear as ‘demigods’ in front of their patients and they are not always open to refer for a second opinion on diagnosis and therapy. These behaviours lead to a breakdown in communication and vital information is lost. Delegates highlighted that some patients die early as a result of these failings.
From a caregiver’s perspective, it was felt that once the diagnosis of a brain tumour is made, healthcare professionals, patients and caregivers should together discuss all of the treatment options thoroughly. For example, no information is often given on the risks involved with and without surgery.
Delegates also said that information is not the same as knowledge: the source of knowledge is experience, and this experience is better fortified and valued when shared. There is also a need for brain tumour care to be patient-centred. A change of attitude to reflect this improves quality of care, referral, use of available and affordable therapeutic options and optimisation of time for better decision making.
Communication between all stakeholders on different platforms and media channels was felt to be very important. Communications through scientific journals, which is where most information on brain tumours is found, are not accessible to everyone: some articles must be purchased, and the scientific language could be very difficult to understand for the layperson. There is, therefore, a great need to freely share information in understandable language that is available at easily accessible sites, thus offering a great benefit to those who are most in need.
I feel that SNOSSA is adopting the best way forward: getting everyone involved at different levels of brain tumour care for the benefit of patients and caregivers in terms of their quality of life, and for scientific advancement.